Klinefelter Syndrome - what to do?

We found out a few days ago that our boy is XXY - so far we have only done our own research online, we have an appointment with a specialist on Thursday.

I keep changing my mind about what I think, I know this isn't terminal and there is every chance he would have a normal (or close to normal) life but on the other hand he could have special needs etc.

I can't help but think what the impact could be on our other son, I wouldn't want him to have to suffer if a sibling required a lot of our focus and attention - and if it was an extreme case he would take the burden when my husband and I were no longer around.

We desperately want another child and time is not exactly on our side - I am 38 so if we did decide not to go ahead with this pregnancy then what if that was our chance for another child gone?????

I don't really know what I am asking here if anything but I don't have anyone else I can talk to about this other my husband......

It's a very difficult, heartbreaking decision. My TFMR was in January at 19w for a fatal skeletal dysplasia. Therefore, we didn't feel like we really had a choice, and I have to admit that at times I have been very thankful that it was such a clear-cut situation.

Unfortunately no one can tell you what is best for your family; that is something you and the husband have to decide. Your reasons are very valid. You both just have to decide what you are most comfortable with. I wish you the best during this difficult time and peace thereafter!

I'm sorry. I don't know much about the condition. I just did some research, and like you said, there's no way of knowing how severe case it could be. You have to decide what is best for you and your family. It's such a hard and unfair situation to be in. My baby's condition also wasn't fatal (T21), but there's such a broad spectrum, we had no way of knowing if he would be a functioning DS kid, or wheelchair bound with no cognitive ability. It was just a chance we couldn't take with our child's life. It would have been unfair to him, us and our toddler.

I just terminated in December for T21, I was 36 at the time. I'm now 37 and pregnant with my rainbow...baby is due shortly before I'm 38. While time is not totally on our side at this age, it's not totally against us either. My dr didn't really have any concern about me getting pregnant again given my age, he actually encouraged us to try again!

This is such a hard, personal choice. We terminated in Oct after a diagnosis of T18 - I guess in some ways we were fortunate her abnormalities were extensive and she likely wouldn't have survived.

In terms of having another child I was 38 when we terminated and I'm currently 22 weeks pregnant with a healthy baby girl, I will be 39 when I deliver. So it is possible to go on to have a healthy baby after a TMFR even in your late 30s.

I am so sorry you and yours are going thru this. I am not too familiar with your baby's condition. The best thing is to gather as much information from your specialist and ask whatever questions come to mind no matter what it is and you n your hubby make the best decision that sounds fit for both of you. I know it's difficult as we Tfmr last December as our baby boy had trisomy18 and it was fatal. Just know we are all here for you. Please keep us posted.**Hugs**

OP, we TX in Oct due to T21, and like Shellbell we didn't know what end of the spectrum our child would have been. We also will be having only one child so we didn't want her to be a warden of the state after we died. My husband and I decided to try for six months after the go ahead from our dr and if we were to get pregnant it was meant to be. I'll be having our rainbow 6 weeks (give/take) before I turn 38. And the drs were really encouraging also.

It's an incredibly difficult time, hang in there. Talk to the specialist see what they have to say. Please keep us posted on what ever the outcome is. The ladies here are very supportive. (((Hugs)))

I am a sibling of someone with special needs (autism). Where there times I felt like my parents spent more time with him? Of course, they had to. Did they also go out of their way to make sure that they made up for it and spent individual time with me? Absolutely.

I am the person I am today because of who my brother is. He has taught me more about faith, patience, love, and the importance of not judging others based on what you see than any "normal" person could have. I am now a special needs preschool teacher and am so blessed to work with kiddos and their parents.

My brother and I have such a special bond, and although we have two other siblings, I know that I will be the one responsible for him once our parents are gone. In no way do I see this as a burden but as an opportunity to care for and serve someone who has been so influential in my life.

Has it been an easy journey? Not at all. Would I take his disability away if I could? In a heartbeat. However, I believe that God does not make mistakes, and my brother has touched and changed so many people. I cannot imagine what my family or I would be like without him.

I am not a believer in an organized religious institution, and that definitely taints my opinion of these matters. I think our lives are what we make of them. I am thankful we sometimes have the power to choose whether or not we are willing to bring a child with a disability into the world. I know we do not always have this choice, but sometimes we do. You only have one life. Your husband only has one life. Your lives and your dreams matter too. A child with a significant disability will impact it in good ways and bad. The choice is your own and whatever you choose, I support you.

This is a tough situation. I also had TFMR 3 times due to a rare and fatal skeletal dysplasia. I have also been somewhat relieved it was more clear cut if a decision. Not knowing the severity makes it so hard. I hope you find some peace in whatever you and your family decide.

I haven't read the other comments but it's a very hard decision. I made the decision to have a d and e at 20 weeks because of skeletal dysplasia, and at that time I didn't know which kind it was. It was the best choice so the baby didn't suffer. I'm not sure what the effects of xxy are, but put your pros and cons together and no matter your decision you will have support. I hope that helped. Xoxoxox good luck sending prayers your way.

I was faced with similar choices. I also have a healthy 3 yr old son. We choose the TFMR and I know it was the best decision for our family. I look at my son and his wonderful healthy life and can't imagine putting HIM and my other child through a life of suffering... My husband always says to me, I would rather live with sadness and guilt then live watching a child suffering and with severe disabilities. So think about what you would rather live with? Whatever choice you make is the right choice. Hugs to you...

We had a similar issue. I have a 10 months old baby girl and we terminated 10 days ago due to our boy having T21. It was the hardest thing we had to do but for us was the best choice for our family. Among other reasons we don't think it would be fair for our daughter. I am 39 with family in Europe so realistically he would have become her burden. We will be trying again soon so we will see. I secretly hope it will be a girl since so far I keep loosing all boys.